Im getting desperate

[KICKSTART]

Well i went for dialysis yesterday and had my morphine, the results good and bad ! I took it at the start (oral) and it was only a small dose but i got to 3 hours ok, then my usual problem , the pain in my head kicked in . Im totally at a loss as what to do now , not because of the morphine but my actual dialysis.
I will try and explain what exactly happens and hope possibly someone on here can help me find a solution? 
Firstly im not going in overloaded its very rare i have to take off over 1.8 (not including drinks and washback)
I HAVE tried every program on the machine , all 3 profiles and the loop, none of them giving good results , or a better outcome.
I go on the machine now, i dont set a profile or the loop , i set my BVM (do you call it the crit line?) to 89.
In the first hour i can drop straight down to 87, so i stop the machine pulling fluid off and wait for my BVM  to rise again , then as soon as it gets to around 95 , i start pulling off again and this is how most of my session goes, till i get to the last 2 hours.
Now we have the BVM in figures and as a graph , the lower the figure , the less fluid. With the graph , there is a straight red line , anything above=fluid , anything below=dry.
For the last 2 hours of my treatment the graph was well below the red line , so i stopped the fluid being pulled off and waited to refill, it never happened , in 2 hours it didnt move.
Ok so i know what you are going to say ..you are DRY , it must not be there, and i agree with you , all my symptoms , the head pain , cramp in my ribs point to being dry.
So my question is .....at 10 o clock last night i felt totally overloaded , im really breathless , my legs are fine (for fluid) but my stomach is totally ballooned up and very tight . I have had to sit up all night again because i couldnt breathe if i lay down. No i havent come home and had loads to drink, Im am monitoring my fluid beyond belief (the other day i managed on just 400 mls) and most days limit to 800mls . My  allowance is 1500. So what the hell is going on ? I cant carry on like this , no sleep , cant do anything .
They are going to double my morphine tomorrow  and im confident that will sort out the pain but why am i like this after a dialysis session ? No one at the clinic seems that interested , more cover the pain and do 4 hours and yes i did do the 4 hours yesterday .

[gothiclovemonkey]

i have some trouble with this, headaches really bad about the last hour, lasting way into the night, sometimes the next day. they say is normal.....
Also when i swell i only swell in my belly, rarely in my feet or legs.
And here lately i have had a ton of trouble sleeping due to breathing issues, and they just put my on oxygen while im there, dont do anything else about it.....
I wish i knew what was up too!
Its disappointing that they wont really give a damn enough to figure it out.

[silverhead]

Sharon went from several years of swollen ankles that the Neph was always harping on, but she was fine test wise , then about a year ago the ankles went to "normal" but she developed "the belly" (it was not fat), to us the fluid definitely shifted, but the Neph was happy and nobody seemed to really be concerned.
About the Morphine, maybe try a dose at the beginning, and another at 2 hours to see what happens, seems like doubling the dose at the beginning might not leave enough of it active in the last hour.......
Tom

[KICKSTART]

So it is happening to other people then?  Any solutions?  How can i continue to function with little or no sleep ?

[MooseMom]

This sounds truly, truly dreadful.  This might be a stupid question, but do you think your belly bloat might be pushing on your diaphram, making it hard to breathe?

[gothiclovemonkey]

Unfortunately lack of sleep can cause alot of physical and mental problems. Have u tried anything for sleep? like Tylenol PM? I am thinking about trying it. I get about 1-3 hrs a night IF im lucky.

[Bruno]

I can only make two suggestions and these are based on my own experiences which are similar to yours. Please do not adopt my solutions without further expert advice because what worked for me may not work for you.
Firstly, I upped my fluid intake. I had become dehydrated from drinking too little fluid between sessions.
Secondly, when you get to 1 kg or more to take off in a session you a getting close to a target that can vary considerably day to day. By that I mean that 1.5 kg may be a real problem one day (far too much) and a breeze the next. My solution? Always undershoot your goal if it is under 2kg.
The second point often translates to a fluid loss per hour of 350ml or less. I've often used 250.
I'm very prone to low BP under dialysis so I've learned to watch my goal and fluid loss per hour like a hawk.
As for lack of sleep some nights I'd love some advice as well.

[RichardMEL]

Bruno you make a good point. Some people and some accesses(eg: fistulas) can only handle a certain UFR (UF rate - or how fast fluid is being taken off). If I ever need a UFR of > 500 (ie: a total of 2.5kg over 5 hours) then I use a UF profile, which is a way of managing the fluid removal. For example I use a profile (number 6) that starts off taking MORE, then steps down, with "breaks" every half an hour where the UFR goes to 100 for 30 mins - which allows the body compartments to refill. However everyone's different.

Like you, I usually keep my treatment fluid change to under 2kg. That way I have no sweat taking that off (plus the 0.5 for the washback and cup of tea).

Fluid management can be one of the most difficult things about dialysis.

[Tracy]

I don't know enough about the different settings as I am still a newbie.  But, I do take Tylenol PM every D night.  I have D on Mon, Wed, Fri from 3:40-7:20 or so and I am so achey and weak, that I have to take something or I can't sleep, due to pain.  It does work for me.  Sometimes, I just take two extra strength tyenol for pain, but the PM part helps with sleep.  I started off by taking just one.  That was enough.

Good Luck!!

 

[vcarmody]

My husband used to get horrible headaches when in center, his doctor suggested they turned off the sodium on his machine and this did help... don't know if this will help anyone else.  Sense we started Nxstage he no longer suffers from headaches, cramping or that tired achy feeling after his treatment.  He feels so much better now   

[Restorer]

Have you been checked for fluid hiding anywhere else? I don't know if it's possible, but maybe you have fluid building up somewhere in your body - between membranes or in body cavities - and something's keeping it there.

There must be other things that can contribute to feeling "overloaded," but I have no idea what they might be. Sometimes I feel some of the same symptoms and pains that I would if I were overloaded, but my weight is hardly a kilogram over my dry weight.

[RichardMEL]

might be time to run a BVM or one of those funky scales that measures total body fluid percentage to see if you're too wet or not.

[BigSky]

You might ask the doc about it but the belly bloat might be from the morphine.  Opiate type drugs can slow down the digestive tract. 

[hexoffender]

Yeah Opiates alway constipate me. But as for sleep, try Melatonin. It's all natural and doesnt have any side affects, and doesnt knock you out, just helps to calm your body.

[KICKSTART]

Thanks for all the feed-back , but ..been there /done it/ got the t-shirt.
RM ..run the BVM  every session !
Bigsky ..bloated stomach for weeks , morphine first time on thursday ..so not that !

Sleeping problems ..been on sleeping tablets for about 2 years ..yes addicitive , yes dependant on them, but on normal nights its those or dont sleep.

Thanks for your suggestions though !